Keeping the faith: Joanne Rose, kidney recipient shares transplant journey in hopes of inspiring many
From the time she was born, Joanne Rose has been battling an inherited disorder that has impacted the health of her kidneys.
Polycystic kidney disease (PKD) is a congenital illness in which clusters of cysts develop primarily within the kidneys, causing them to enlarge and lose function over time. For Rose, she didn’t know she had the illness, or that her kidneys were losing function until 1980, at the age of 21.
“My father had PKD,” said Rose. “He didn’t know he had it until he was in his 50’s. Our three children have also been diagnosed. Chances are, they will need a transplant someday too.”
Since then, she’s endured strict medication regiments, hemodialysis treatment, had both of her kidneys removed at the same time, which is called a Bilateral Nephrectomy and had a failed transplant in 2014.
Despite her hardships, Rose has remained eternally optimistic – making it a point to keep faith in her transplant journey and treat her mind and body well.
“I was fortunate enough that my renal function was normal until about 2007,” explained Rose.
“After that, I became very ill. The cysts on my kidneys continued to retain water. At one point, each kidney weighed about 10 pounds. I was forced to retire in 2012. I had five major surgeries in 25 days after my first transplant. It was a dark time in our lives, but I never gave up. I was determined to be as healthy as I possibly could. Walking and eating well made me feel better physically and mentally – as well as being surrounded by our wonderful family and friends.”
The COVID-19 pandemic has been particularly difficult for those who are immunocompromised.
As a highly sensitized individual, Rose like many others who await or recently received a transplant is at a greater risk. For example, she was unable to book guest appointments at hemodialysis clinics in other provinces once restrictions were introduced at the beginning of the pandemic. Something she used to do when she wanted to visit family.
“Our family has provided endless support,” said Rose. “They have been our light through much of this. My husband and I haven’t been able to leave Nova Scotia and visit our daughter in Ottawa for over two years. If we wanted to go away for a weekend, it had to be cut short because I couldn’t be too far from home where I undergo treatment. It has been very hard.”
Having received her second kidney transplant just over a month ago, for the first time in a long time, Rose is able to look to the future and make plans. Feeling overwhelmingly grateful, she shared some of the things she and her husband Reg, are most looking forward to post-recovery.
“It’s the simple things,” said Rose. “Like having a nice, hot cup of tea or glass of water without worrying about my fluid intake.”
“Returning to a normal routine with my family at home. To not have hemodialysis every-other-day is almost beyond disbelief. More time to spend with my grandchildren. To travel. To no longer be bothered with maintaining equipment, ordering supplies and managing it all.”
Rose said it’s only due to the wishes of her donor and their family that she is here today. In sharing her story, she hopes to provide encouragement to future recipients and help shed some light on the impact donation has.
“To those who are awaiting a transplant – never stop hoping. I am forever thankful to my donor and their family for this most precious gift.”
“For anyone thinking about donation, I ask you this: please don’t take your organs and tissues to heaven, when there are so many angels here on earth who are in need. Thank you.”